About Us 

She was cured not just by her psychoanalytic treatment, 

but ... by changing the society that was making her ill.


Mark Blechner writing about Bertha Pappenheim, 

the FND patient who Sigmund Freud credited as being the true founder of psychoanalysis.

Patient led initiative

We started out as just two people. We started a local support group because we felt the large overseas groups had limited relevance to our cultures, laws and medical system. We understood that there was a lot of work to here do in Aotearoa. We decided to go it alone and do it our own way.  

While we are a patient group, this site has been reviewed and endorsed but the neurologists at the New Zealand Neurological Association and Neurological Foundation, and by Professor Jon Stone of Edinburgh University. You can trust that the information here is scientifically sound and we have the full support of the experts. 

Letter from NANZ to FNDA Aug 2024.pdf

Action research 

We conducted action research specifically designed to inform and drive social change. We launched a survey to understand local needs and experiences. We were not sure where we were headed, only that we knew something needed to be done. 

Halfway through our project, we joined in partnership with members of the Neurology Research team at Auckland Medical School. With our group's consent, one academic joined us to observe and get to know our community. 

We arranged online Q&A sessions with medical school staff. For many of our members, this was the first time we had access to specialist knowledge and simple explanations. Our community started to feel as if somebody was listening and that we had a destination that we were moving towards.

We had 49 responses to our survey. This was approximately half of our group members at the time the survey closed. We are still collecting information. If you have a story you want to tell us about your experience in the medical system, please email us here. Our project is principally a call to action. The more evidence we have to drive this change the better. 


This website

The main thing our survey respondents said they needed was information. We chose to build this website to meet this need. We have woven the rest of the research results throughout the site. All challenging information is guarded by clear trigger warnings. The research findings and discussion can be found under the menu FND Action. 

The site was put together by a core working group of around 8. The lead researcher has FND and a background in social science research, central government policy and evaluation. Before launch this site was reviewed by 25 people, including academics, advocates, one FND medical specialist, FND patients and FND parents. 

We decided to make the site a pared down resource for shattered patients, worried whānau and puzzled doctors. Construction of our website became a group capability building exercise. We were building a website, but we were also building hope into our lives.


We are not a charity or a formal organisation - yet. We funded and researched this website ourselves. We are not doctors and this website is not intended to replace medical advice, but compliment it. We would much prefer that our people all receive quality medical care from readily available specialists. All of the medical information has been drawn from: 


There is a small section on the page Tips for Patients where we offer tried and tested FND hacks that are not based on scientific evidence. Our market research told us that new patients wanted to know this stuff. So we have included this information with a disclaimer. Much of this information relates to managing common comorbidity symptoms. 


There is a little bit of information on the page on specialists treatment that has been drawn from websites of relevant specialists. 


Some of what we have written on this website presents an experience-driven critique of some medical approaches to this disorder. We want this website to be a quality resource. Therefore we are open to correcting any incorrect or misleading medical information. We will however, retain our right to differ. We are happy to hear from you if you are in working in the field. 


Join the movement 


At the time this site was launched our support group had 187 members and were growing by about 2 new members a day. Most of us gather in our Facebook group here. Patients, friends and whānau are welcome. This group is intended only for those with connections to Aotearoa. 


If you find this site helpful, you can help us by writing us a review on Google. Please click here to write a review. Taking time out to give us three little  clicks will help us rank more highly on Google and reach more people. 



Disclaimer 


All content within this website is provided for general information only, and should not be treated as a substitute for the medical advice of your own medical practitioner or any other health care professional. FNDA is not responsible or liable for any diagnosis made by a user, based on the content of the web site or opinions or advice of others via our Facebook group or any of the discussion groups mentioned on the site. FNDA is not liable for the contents of any external internet sites listed, nor does it endorse any commercial product or service mentioned or advised on the site. 


Always consult your own medical practitioner if you are in any way concerned about your health. The contents of this site are intended for use of residents of Aotearoa only.